FEAT DAILY NEWSLETTER
Sacramento, California http://www.feat.org
December 12, 2001
News Morgue Search www.feat.org/search/news.asp
·
Cruelty & Prejudices - Obstacles In The Way Of The
Disabled
·
Telltale Signs Of Autism
·
Wife of Brit Prime Minister Takes Personal Interest
·
Single Vaccines: Editorial
·
Reader’s Posts
[By Paul Vallely and Cahal Milmo.]
http://news.independent.co.uk/uk/this_britain/story.jsp?story=109443
How to donate
http://news.independent.co.uk/uk/this_britain/story.jsp?story=109444
It was dark outside. But Emma’s eyes were not on the cold
night air at the pleasant townhouse she shares with her mother and father in
the north London borough of Camden. Instead, as she sat in her special, wheeled
dining-chair, her eyes were transfixed by the TV screen on which a favoured video,
The Wrong Trousers, was replaying for the umpteenth time. She did not blink.
As she watched, she hungrily devoured her favourite meal,
spaghetti with tomato sauce covered in what she calls “Parma and cheese”. After
eating she shifted across to the computer and loaded a succession of computer
games before fairly swiftly announcing, in a one-word demand, that she wanted
her mother to help her upstairs to play pool.
The snooker table dominates her little bedroom. She plays
on it for two or three hours a night; her obsession with it has brought
enormous improvements in her co-ordination and motor-skills. Leaning on the
table she has even learnt to take some steps unaided.
Emma was a premature baby who, at birth 10 years ago,
weighed 1lb 6oz. As the months and
years went by her parents realised her birth complications had not just
produced some paralysis to her left arm and leg but also an effect on her
brain, producing some of the impacts of epilepsy, cerebral palsy, autism and
sensory maturation difficulties.
Despite all that, or perhaps because of it, Emma, a pretty
little girl with her hair in pink-banded bunches, is a happy child. But 3,000
miles away there was a different story.
That same night in a two-room, windowless, mud-brick hut
in the dusty West African provincial town of Bobo-Dioulasso , in Burkina Faso,
another little girl was telling her tale. Coulibaly is disabled too. She lost
her leg in an accident with a rifle when she was two. But there was a
melancholy about her.
Coulibaly, her hair combed into dreadlock plaits above her
long, thin face and expressive eyes, was showing off in the communal courtyard
in front of the bedroom she shared with her mother, brother and sister.
Supporting herself on her crutch, she was playing her favourite game,
hopscotch, and was, she said, hoping that for tea her mother would have been
able to afford her favourite food, canned tuna. Girls this age – Coulibaly is
13, and Emma nearly 11 – are keen on “favourite” things.
Emma will almost certainly never meet Coulibaly. They live
in worlds separated by a vast chasm of wealth and expectation. It is a gap as
wide as the geographical distance that disjoins them. Yet across that great
divide is a bond that ties together the way the two girls experience life. For though
one lives in grinding poverty in the remote sub-Saharan savannah and the other
in the relative affluence of the Western world, what the girls have in common
dominates both their lives.
But the pair defy stereotypes. “Sometime people think I
feel sad because I look at the other children jumping and cycling, but I don’t,”
Emma says through her mother. “I really like to see other children jumping and running
about and being silly. It makes me laugh.”
Coulibaly says: “I’m not allowed sport lessons. They gave
me a dispensation even though I want to take part. It’s a pity because I would like
to be in a running race. I can’t think of many good things about being handicapped.”
In part it is the physical rigour of Coulibaly’s existence
that gets her down. Once she could rise at 7am to get to school. But the
neighbourhood taxi broke down, and there is no money to fix it. Now she has to
get up at 5.30am and to reach the Lycée Provinciale she laboriously walks the three-mile
journey along the ochre roads of Burkina Faso, using a crutch to support her
body in place of her shattered right leg. “Sometimes I’m late for my lessons,”
she says. “That makes me cry.”
It makes her mother, Bernadette, 44, weep too, with
frustration at the necessity of her daughter’s daily slog. Life for a
handicapped child in the world’s third poorest country, she adds, is “cruel,
pitilessly cruel”. The cruelty is not merely physical. Some of her school
fellows are nasty, she says. “They call me One Foot and say I’m bad. I wouldn’t
want to be in a different school with all handicapped children. But here I do
get mocked and teased.”
That phenomenon may be more indirect in the West but it’s
still there. “It’s not the lack of
wheelchair ramps which is the real problem for children like Emma,” says her
mother, Christina “It’s the attitude of other people, the teachers and
education specialists who discriminate against her, and the secondary schools
who ask almost as a condition of admission, ‘Does your child do this? Can she
do that?’
“Then there are those members of the public who arrogate
to themselves the right to make scathing comments in supermarkets about the ‘bad
behaviour’ of children with disabilities or utter loud asides like, ‘Fancy bringing
a child like that to a restaurant like this’. It’s an indignity. Emma has a right to belong. And yet we have
to fight for everything she needs.”
There is still, almost everywhere, an aura of shame that
lingers around disability, and which finds an echo in the distaste and
hostility with which the able-bodied world greets those with physical and
learning difficulties. Again the starkest manifestation are in the Third World.
There is a widespread belief there, as in many parts of Africa, that a disabled
child is the result of a spell by a witch. “For me, having a handicapped child
is not something to be ashamed of,” Bernadette says. “But they tell me I am
cursed.”
The reaction is more subtle in the West but, here too,
there is the same desire to shun those with a disability. “There are those who
treat you as if you were contagious,” says Emma’s mother, Christina. “The
relatives who say, ‘It’s not from our side of the family’ or the friends who
ask whether it might be something you did or took during pregnancy.”
Coulibaly and Emma have something else in common. Both
have been helped by the two small charities that The Independent has chosen to
be the recipients of money raised from readers in our Christmas Appeal this
year.
In Burkina Faso, Coulibaly and her mother have been
supported by Action on Disability and Development (Add). The charity also runs
a co-operative that repairs hand-driven tricycles, and trains disabled women in
skills to avoid them being driven to prostitution in the Aids-riven country.
Add also works with landmine victims in Cambodia, where
one in 250 of the population is disabled. It helps a co-operative of blind
women farmers in Uganda who have been expelled from the individual communities
for being “cursed by witches”. It has set up income-generation projects in
Lesotho, Mali and Bangla-desh. It presses for disabled people to be included in
mainstream decision-making in Zambia, Ghana, Sudan and Zimbabwe and works with
disabled self-help groups in India.
In Britain, Emma and her family have benefited from
services provided by Kids, including a home-learning programme and
developmental play nurseries which, step-by-step, teach children with physical
and learning difficulties and skills other children pick up instinctively by
observation.
Kids also offers respite care by sending skilled workers
into the home—Emma has a helper in developmental play 10 hours a week – and
runs an educational advice service to help parents lobby local education
authorities for their rights. It runs support groups for the siblings of
disabled children as well as family support services and a forum for disabled children,
some of Britain’s most under-consulted people, to air their own views on their
care.
Over the weeks, The Independent will publish daily
accounts of the detailed work Add and Kids do. What will emerge is an in-depth
look at a society, at home and abroad, whose attitudes and prejudices are far
greater obstacles than anything which can be overcome with a wheelchair ramp.
Christina says: “One of the great myths about disability
is that children with these problems are incapable of improvement. They are
just written off.” She was 38 when Emma was born and the intervening years have
produced a remarkable change in her. “Early on, I suppose, you want your child
to be perfect, to redeem your own imperfections. In a world that values people
for being beautiful, clever, rich, good talkers it is quite a learning curve to
realise we should value none of these things when it comes to considering the
worth of a human being.
“You realise people have to be allowed just to be. I
wouldn’t say, ‘I wouldn’t have her any other way’, because her disabilities
create difficulties for her. But she is a source of never-ending pride and joy. I’ve realised our daughter doesn’t have to
go to Oxford for us to love her.”
Her husband, David, says quietly: “I don’t think I was
aware you ever had these negative feelings.” Christina says: “I felt it was shameful
and toxic and kept it to myself. But Emma has handed me a purpose and grounded me.
I don’t have any existential questions any more. And I have discovered skills
and strengths I never dreamt I had.”
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* * *
As part of The Times Christmas Appeal for The National
Autistic Society, our
reporter reveals the difficulties of diagnosing the
condition
[By Penny Wark.]
http://www.thetimes.co.uk/article/0,,72-2001571729,00.html
Autism is a condition that responds not merely to
treatment, but to recognition. If a child is found to be autistic, the
expectations around him can change and pressure can be lifted, and with it the
child’s anxiety.
Yet, as many parents discover, it can take years of being
shunted from one health professional to another before autism is diagnosed in a
child.
Although awareness of autism is growing, there are still
doctors who know little or nothing about it. Especially at consultant level,
says Dr Judith Gould, a consultant clinical psychologist who is the director of
the Centre of Social and Communication Disorders, run by The National Autistic Society.
“Senior people are not always up to date and may not be
aware of the spectrum of autism,” she says. “There are still areas where they
take a narrow view.”
This year The Times Christmas Appeal invites readers to
help children with autism by raising funds for The National Autistic Society.
Over the past ten years its Centre of Social and Communication Disorders has
led the way in training paediatricians, psychiatrists, psychologists and speech
and language therapists to diagnose autism.
Two years ago a study carried out by the society showed
that 65 per cent of parents saw three or more professionals before getting a
firm diagnosis for their child. Forty per cent of parents waited more than
three years for a diagnosis, and 10 per cent waited ten years or more.
“Parents sometimes have a tremendous struggle to get
through the system,” says Dr Gould. “Our aim is for people to be seen locally,
because then they can be offered ongoing support. But training is essential
because autism cannot be diagnosed with a blood test or a brain scan; it is a
matter of taking a history and understanding different manifestations.”
For a child of two-and-a-half to three the indications
revolve around social interaction. Autistic children do not relate well to
other children or their environment, they may hit out. They like routines and
are resistant to change. “The autistic child is more interested in leaves on
the trees or a particular toy than another toddler sitting beside him. They
lack a social instinct.
“We think mothers usually know within the first few months
that something is not quite right about their baby. He’s not alert and lively
and curious and exploring in an appropriate way.
“Or if a baby is very passive, that is another indicator
because it’s normal for babies to cry and be demanding and want cuddles. An
experienced clinician can pick it up within the first year or 18 months. Most
parents seek help when they see that their child’s language and play isn’t developing,”
says Dr Gould.
Parents concerned that their children may be autistic
should see their GP and ask for a referral to a child development centre. The
earlier the diagnosis, the better for the child and the family. Dr Gould has
seen adults given the diagnosis of Asperger’s syndrome at 50. Their condition
has not been recognised because they are passive, but they have led difficult
lives in which they have been teased and bullied. This need not happen, she
points out, and training professionals to diagnose the condition promptly is
the way to make the lives of those who have autism easier.
The National Autistic Society: 020-7833 2299;
helpline: 0870 600 8585
* * *
[By Sarah Womack.]
http://news.telegraph.co.uk/news/main.jhtml?xml=/news/2001/12/11/nmmr11.xml
Cherie Blair has expressed a personal interest in a mother’s
legal fight for compensation for a son she believes was brain damaged by the
MMR vaccination.
Mrs Blair’s response to emails sent to her by Julie Loch
from Wales has raised speculation about whether Leo Blair, now 18 months old,
has received the combined measles, mumps and rubella vaccination.
A Downing Street spokesman refused to comment, saying the
Prime Minister’s children were entitled to “complete privacy in medical matters”.
But a doctor at the centre of the MMR row said the Blairs
should be open about what medical route they had chosen. Peter Mansfield, a Lincolnshire
GP who offers single dose injections, said: “If you expect to be some kind of
role model, it is important to be transparent.
“It is prudent to be beyond reproach. I do not know what
the Blairs’ situation is.” Mrs Blair thanked Mrs Loch for keeping her informed,
and said she would be “happy to receive further information”.
The Department of Health retains faith in MMR, insisting
that parents have no need for concern. MMR is recommended for children at 13
months and for four-year-olds.
But with fears mounting that the vaccine could be linked
to autism in young children, an increasing number of parents are having
children vaccinated privately with separate jabs at a cost of almost £200.
A report by the Medical Research Council has concluded
that the possibility of MMR causing autism in susceptible children cannot be
ruled out on current evidence.
Mrs Loch said her youngest son began to “regress
developmentally and behaviourally” when he was two years old.
He is now autistic, with chronic bowel damage which was
affecting his gastrointestinal tract. She said “countless medics” had refused
to accept that her son was vaccine damaged.
However, her son was among eight cases that had been
selected to represented a group litigation case against the vaccine
manufacturers. Pat Troop, the Government’s deputy chief medical officer, said
she had been advised that the single jabs were not safe.
Dr Mansfield was charged by the General Medical Council’s
disciplinary body with putting patients at risk and failing to conform to the recommendation
of the Chief Medical Officer. The charges were subsequently dropped.
He said: “The MMR vaccine should not be administered in
one dose. When three live viruses are forced alongside each other into the
body, they may mutate with devastating consequences.”
* * *
[In the Scotsman.]
http://www.thescotsman.co.uk/letters.cfm?id=128500
Linda Long, the health development officer for Sense
Scotland, makes a valid point when she says that the alarming fall in the
uptake of the MMR vaccine may lead to the re-emergence of measles, mumps and
rubella (Letters, 7 December). It would be a tragedy if anyone became ill or
disabled through the consequences of a large number of children not being
vaccinated.
However, how can we justify preventing one serious
disability by replacing it with another? If the consequence, for some children,
of having this vaccine is autism, then let us take steps to avoid this tragedy,
too.
Allowing parents access to single vaccines may not be the
long-term solution to this frightening dilemma, but it is what is required now
to raise levels of immunisation.
A commitment to real research, which investigates the
children diagnosed as having autism and/or the bowel disorder caused by MMR,
coupled with a complete review of our whole vaccination policy, may provide a
safe and manageable alternative. Until this commitment is made and carried out,
allowing parents the choice of single vaccines or MMR is the only way forward.
* * *
We need an ABA Therapist/Shadow two days a week in the
Hilton Head, SC area.
Delightful 9-yr old little boy with mild autism.
Affectionate, loving.
Respond to agannon@hargray.com.
Thank you!
My 4 year old autistic daughter’s security object has just
about
disintegrated. It is a 13 inch soft Goodnight Moon bunny
doll. This size
doll is no longer manufactured. I tried to replace it with
the new 22 inch
version but she wouldn’t accept it. She has many rituals associated with
this doll. I am scared she will never sleep after this bunny
falls apart. If
anyone has one and is willing to sell I will pay top dollar.
We are looking for a private
ABA/VB school in northern California for our 6 yr old. Have already visited The
Stars School. Any other suggestions? Linda DeRosa [lderosa@earthlink.net]
Have just moved to Kernersville, NC from Atlanta. Looking for an O.T. that
has a lot of experience with children in sensory integration
and also
auditory training.
Am also in need of a well trained Speech therapist that
specializes in Autism and Apraxia. This can be either in the
Greensboro or
Winston-Salem areas. jhud2@earthlink.net
I would like any information you have re: Julie
Donnelly. She is testifying for a
school district in a due process hearing.
Contact me privately.
Has anyone received a rhogam injection to protect your
unborn child from RH
blood imcompatibilities? LMweinmaster@cs.com
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